Food as Therapy for Narcolepsy Patients

Some patients who try a ketogenic diet find symptom relief from the neurological sleep disorder.

By Yoona Ha

For years Gina Dennis was experimenting with different ways to keep her narcolepsy symptoms at bay. She tried different brands and doses of medications, started taking naps and breaks throughout the day, and strived to practice good sleep hygiene. But even after years of experimentation and adjustment, Dennis didn’t quite feel like she had her condition under control. Then one day, after her son was also diagnosed with narcolepsy—she was determined more than ever to find a treatment that worked.

“It just took the wind out of my sail and all of a sudden playing this game of adjustment with medications wasn’t good enough for me or my son,” Dennis says. “I started reaching out to doctors and looked up possible remedies online to find an option that would work for us.”

Her search for a solution led her to try a diet that’s ketogenic, a type of very low-carb, high-fat eating plan that has been used as an epilepsy therapy since the 1920s. For Dennis, whose mother also has narcolepsy, making a dietary change as recommended by her heart doctor seemed like a welcome alternative. She already struggled with cholesterol issues and her mother had already had three heart attacks by the time she turned 60. It was time for a change.

“I hit ketosis in seven days and it was like a fire was lit inside of me,” says Dennis, referring to a metabolic state characterized by raised levels of ketone bodies in the body tissues. “I was awake, I was cognizant, and it was such a huge difference from what I’ve felt before.”

So after six months, Dennis, who now owns Madcap Narcolepsy, a health-coaching firm, introduced the ketogenic diet to her mother and son. Ketogenic diets were already offered as a form of treatment at more than a hundred hospitals (primarily for epilepsy) across the United States, Canada, and other countries.

According to Dennis, both her mother and son saw remarkable results within months of being on a ketogenic diet. After months on the diet, her mother, who had difficulty performing routine activities like driving and brushing her teeth, was gradually able to engage in her daily activities without much difficulty. Dennis’ son also reported feeling in control of his symptoms.

Within a couple of months, Dennis, her mother, and her son dropped narcolepsy medications altogether. It’s been six years since Dennis and her family stopped taking medication and with lifestyle changes alone, she says the condition has been easily manageable for the most part.

“There’s been a huge shift in how people view dietary adjustments as a viable treatment option for narcolepsy; in the past, some people just thought it was crazy,” Dennis says.

The idea of food as medicine has been a controversial topic in the past decades. But dietary adjustments aren’t fringe treatments for narcolepsy. In fact, as Jose Colon, MD, MPH, a sleep physician and founder of Paradise Sleep, argues, it’s mainstream science.

What concerns Colon is the lack of discourse among physicians and patients on the efficacy of dietary modifications as an effective form of treatment for narcolepsy.

A recent study revealed that less than 15% of narcolepsy patients rely on medications alone and up to 54% of these patients rely exclusively on behavioral strategies to control their symptoms.

“As someone who has been treating narcolepsy patients for my entire career, I’m seeing great success among patients who undergo dietary modifications,” says Colon, author of The Sleep Diet-A Novel Approach to Insomnia. “Endocrinologists already understand that high glycemic foods turn off orexin neurons, which stimulate wakefulness, but for some reason the sleep world has overlooked this.”

That’s why some narcolepsy patients like Dennis are hopeful to see a more robust dialogue and awareness about ketogenic diets and other dietary alternatives among researchers and patients.

“It’s really my dream that all treatments for all diseases including narcolepsy are viewed in a more holistic manner—that’s why education within the medical community is so especially important,” says Dennis.

23 Comments

BJ, I so hate hearing when narcolepsy hits our babies. I’ll never forget the day I realized my son was showing symptoms and how much that hurt to see.

Yes children can use this diet to mitigate symptoms but I stress that it be done with the guidance of a nutritionist/dietician since they are still growing and will need to ensure nutrient density/variety to meet their body’s needs. If you go to The Charlie Foundation website (www.charliefoundation.org) they have been using the diet for children with epilepsy for years and are seeing good results. They have links to nutritionists and dieticians that are familiar with managing this diet for children.

Nice article, but a little misleading. I have full-blown narcolepsy with cataplexy and eat a ketogenic diet (<20 carbs a day). It works wonders for brain fog and making EDS more manageable – a LOT more manageable. It's still there, though. "Lifestyle changes" can very well mean job changes if you have employment that is at least partially sedentary and not nap-friendly when it's critical.

And ketosis doesn't do a damn thing for my cataplexy in the long term. I noticed an initial reduction that lasted for maybe a few weeks until I was fully keto-adapted, and then it was back just as strong. Still taking Xyrem for that.

Andy,
It’s good to hear that the diet works well for your EDS and brain fog… that has to make things a bit easier for you. Lots of folks that do this diet use it in combination with meds and find that they are able to manage better than with meds alone. I say that this diet “mitigates” symptoms because it lessons them rather than removes/cures them. But at least there is some relief rather than none, right?!

Yeah, you’re definitely right about that. It’s funny, I have been keto for a few years now, but I’ve fallen off twice, for a period of a few months each time, and when I get back on the diet again it blows my mind how I ever let myself fall off in the first place. When I am medicated, I am doing the best I can to manage a disease while medicated. When I am medicated and in ketosis, I am functional.

I am currently in the early days of the low carb/higher fat diet (probably straddling the line between Atkins and keto). I have hypersomnolence/borderline narcolepsy based on a sleep latency test I underwent after battling strong daytime sleepiness at work and while driving. Anyways, I currently take modafinil 200mg, but still have strong tiredness attacks every afternoon at work and sometimes while driving. Along with this diet, have you had any luck with L-Carnitine, Tyrosine, Ashwagandha, Bacopa, or Krill oil? I’ve heard these can help, but don’t know how they will interact with the Modafinil and if they are worth the money. I’d love to use the diet and herbal route exclusively long term if I can (31 years old) Thank you in advance!

Gina, I was fully diagnosed 08/2017. I had been previously diagnosed with sleep apnea in late 2005 and then after working for a cardiac/sleep provider was retested and diagnosed with Idiopathic Hypersomnia in 2010. Although, my mom suspects that I have had Narcolepsy since I was born. This is due to the fact that even in the nursery first days of my life, she states that all the babies around me were crying and I was sound asleep. To the point that, her first thoughts were that I had a hearing problem. I can remember even at a young age not wanting to wake up in the morning, going to bed early, and falling asleep in class. When I was in kindergarden we took afternoon naps and I remember being the first to fall asleep and the last to wake up. Sometimes my friends would already be outside playing after nap time and I would just be waking up. Currently, I am on 3 different medications, two are maxed dosed and the other is over the recommended max dosage and I am still having trouble staying awake at work, getting up on time for work, and falling asleep shortly after I get in the car when my husband picks me up after work. I am currently on Nuvigil 250mg QD, Addrell 20mg BID, Addrell 5mg BID, and Xyrem 5g Qhs and 5g 2.5-4hrs after first dose. Not only am I frustrated but I am extremely irritable and my life is not my own. My doctor suspects that I may actually still have sleep apnea and I will be retested next week, however I am looking for alternatives for life changes that may possible help me if this sleep study comes back yet again as negative for sleep apnea. I have been researching alternatives and saw the Ketogenic Diet, unfortunately there were not many things on the list that I would be willing to eat in order to make this a life change and not just a diet. Can you give me a list of foods that you have found work well for Narcoleptics? Currently, my diet only really consist of grapes, grapefruits, bananas, apples, pretzels, ice pops, yogurt, cashews, pumpkins seeds, honey nut cheerios cereal, special k cereal, ice cream at times, and if we go out probably a steak or fish, baked sweet potato or sweet potato fries, salad, chicken thigh, and shrimp. I don’t really eat dinner when I get home because I have to take my medicine by a certain time and if I eat I have to wait 2 hours. However, when I do eat dinner at home it is usually, tacos w/ground turkey & ground beef, spaghetti w/ground turkey & ground beef, black beans w/kielbasa sausage. I am not a fast food or processed food person, but if I do eat fast food it is usually Chick fil-a or McDonalds breakfast. I don’t know what else to do but I know I can’t keep living with this disorder this way for much longer. Please help if you can!

I am 59 an have struggled with idiopathic hypersomnia my entire life. I would sleep at least 9 hours at night and take two 2 hour naps a day when possible. After taking a sleep study prescribed by a neurologist I began taking Provigal to help with my extreme sleepiness. With little relief, he eventually prescribed the stimulant Metadate. It was a game changer for me. After 4 years on the medication my insurance co would no longer covered the cost. I had 3 doctors (neurologist, sleep specialist, family Dr) write appeals to the insurance co. and they still wouldn’t budge. They stood firm on only prescribing the med for ADD and narcolepsy. I took my concerns to an understanding psychiatrist who in-turn tested me for ADD and gave me the diagnosis I needed. I have been taking the stimulant ever since-about 10 years now. It is indeed a debilitating condition which most people cannot comprehend.

As an alcoholic/addict in early recovery, finding the information Gina has online in a desperate search for non medicinal ways to help my unbearable EDS has given me more hope than any psychologist, psychiatrist, physician or sleep specialist by an immeasurable amount. Being in and out of treatment since 2015, when I first tried to get sober, has revealed to me through many painful experiences just how socially conditioned our society is to see a doctor of ANY kind and leave with nothing but another prescription. I have been diagnosed with half a dozen psychological disorders in addition to alcoholism that has plagued me for years and can say with the utmost certainty that NONE of the medications so liberally prescribed to help me served me AT ALL and in fact, made my symptoms so much worse that it was impossible to remain sober. I am almost 6 months sober and MED FREE and, get this folks, turns out I am NOT Bipolar, I do not have General Anxiety Disorder, I am not suffering from Severe Depression yet am simply a 38 year old woman suffering from Narcolepsy and a lifetime of traumatic events that have led me down a dark road. In desperation to not have to sleep 14-16 hours a day I was recently prescribed Modafinil and Xyrem, both of which are controlled substances, and thanks to people like Gina who share authentic experience, strength and hope, I started the Keto Diet a week ago and ordered 32oz of pure MCT Oil she suggested on her MadCap site and in just this incredibly short time feel noticeably better. What a profound God shot it was to read what she shared so selflesssly and in such great detail that even an alcoholic/addict would choose to try her suggestions rather than take substances that are not only addictive, have potential for severe side effects but also have results able to be obtained by a delicious diet and some coconut oil! I shared about this today at my Saturday Women’s AA Meeting and was approached by several women afterward that were so inspired by it that I have every intention to join forces with Gina and spread this message in the ways I can living in LA and being a dedicated member of Alcoholics Anonymous. Gina, thank you for your generosity I will forever be grateful that I found your MadCap page. Our society needs a global change from the Pharmaceutical Monster everyone of us is taught to depend on to a Holistic Focus that actually helps us manage devastating symptoms and HEAL. Anyone out there that can relate to what I’ve said please try this diet and oil that Gina describes, (I also found that Lavendar Oil on my pillow and a natural lavendar supplement I take one of before bed is helping too), and give it a chance! I was drowning in hopelessness and suddenly I can breathe.

My understanding is that ketones inhibit uric acid excretion which causes raised uric acid TEMPORARILY, which could definitely trigger a gout attack. But after a couple of months, the uric acid levels generally subside back to the same level prior to the keto diet. I’m not an expert or doctor so this is just my own take on the research I’ve done, you may want to look into it and see if the keto diet may, in fact, be good for you.

So, any individual with Narcolepsy and/or Cataplexy understands that each person’s illness is different and each person responds to treatment differently.

As an individual with severe Narcolepsy AND Cataplexy, every day is a struggle. I even had to leave my favorite Neurologists for another one because he refused to give me 50mg more on my Nuvigil.. but when you are falling asleep everyday to the point of being fearful of driving.. then SOMETHING needed to change. I also think ALL Narcoleptics are professionals at constantly self-medicating (which is only justifiable since the quality of our days are directly related to our symptoms which stem from the day to day stressors, the rest we get or don’t get, the meds we take, and the food we intake).

I am now 3 weeks into my ketogenic journey and it just hit me the other day that I have not had 1 Cataplectic attack since entering ketosis. This is good for me. Cataplexy is exacerbated by stress and by switching to a fat fueled diet I have felt significantly better overall.

If I may, please sit down for this one. My 1.5yr Male yorkie was just diagnosed with narcolepsy and Cataplexy. He is on imipramine and ridalin 🙁 but hes improving, he spent 7 days in the hospital. I am interested in knowing what foods you all eat? He has been on a raw diet for 9 months. What meat and vegetables and do you eat grains and fiber? Please help, my dog eats better than I do. He is much more awake and alert in the morning and hour after his meal hes down for the count.
Please share suggestions I’m open to ideas. There are only 70 recorded cases in the USA with dogs having narcolepsy and cataplexy.
Thank you

Wow.. This is amazing~ She has also managed to publish her own article!? I’ve stumbled onto her web page one day in research of a suitable diet for narcolepsy and then I read through everything that she mentioned and has tried from a low-carb to a keto diet.
Narcolepsy has hit me for about 6 years now and I’ve been trying hard to search for many alternatives to control the symptoms. I’ve been trying a low-carb diet since the past 2 months, and I still experienced excessive daytime sleepiness from time to time. I wasn’t on medication anymore cos I’ve already given up on drugs that aren’t effective to keep me awake. And after reading up her website, I’ve tried and experimented for myself, and after the first week I could already feel the difference in my wakefulness! I’m so amazed how food and diet could make such a huge impact than drugs!
Now I’m on a Keto diet, I feel my life has changed for the better due to better concentration and longer attention span. Plus I’m performing better each time and I don’t think I want to go back to my low-carb diet anymore.
Thanks to the sharing about her research and detailed elaboration on her webpage, I’m sure it would also definitely help many other narcoleptic patients 🙂

I have had cateplexy since year 2000, and I am now fifty years old and in fit shape eating a high protein low carb plenty of veggies diet. I have tried Keto and it hasnt made a difference at all. I am still severly cataplectic and now narcoleptic. I take the fish oil, but I am going to double the fish oil.

You mentioned you’re on a high protein diet, maybe try a moderate protein high-fat diet (not necessarily keto). I’ve had severe narcolepsy symptoms from 15 yrs old until my first pregnancy at 27 when I was diagnosed with gestational diabetes. Per doctor recommendations, I changed to low-carb, mod-protein, high fat, fast-forward 12 years and I haven’t taken any medications since and haven’t had any cataplexy, hallucinations, or sleep paralysis since! I’m definitely not an expert so this is just my 2 cents. 🙂

Hi everyone, am turning 38 years this year and have had narcolepsy since i was 9. Since nobody new what it was l never used any medication up to day though in terms of food l eat what l have . But one thing i’ve noticed is that it has to do with brain or a part of it. Seems like it goes to sleep. Even as a chip i would force myself as in fight against it and my daily chores but the moment l bump into something l immediately get back to normal. As a maid l always have set alarms for when to do things.

Symptoms began in 5th grade. Undiagnosed and untreated. I’m now 45. I’ve been experimenting with diet for the last 20 years trying to manage symptoms and have had to ignore physician advice regarding diet. High protein, high fat, no grain, no to low carb with moderate vegetable and little to no fruit appears to be my optimal blend (onions are the bulk of my carb intake and 2% milk is the bulk of any sugar intake). Doctors have tried to recommend a plant based diet and while I love vegan food, it drives me nuts and I feel like sanity slips away every time (Roots and grains are mental killers for me and sugar is like drinking espresso before bed). Side note: Doctors tend to freak out at the amount of fat I take in especially as it doesn’t seem to cause the weight gain or biology issues it does most other people. I’ve never understood why but this adds a lot of clarity to the medical misunderstanding of diet and mental clarity.

You’re not gaining weight because no fructose. Neither of the sugars in milk are fructose. Lactose splits into glucose and galactose. You don’t eat fruit. There is a little in onions. Fructose is thee molecule that makes everyone gain weight–specifically fat. And it used to make me extremely sleepy which is why i checked out this site. I solved the problem though, with just 2 nutrients–so I’m good. But I was curious.

I am 22 and was diagnosed around 5 years ago. It really sucks, I can sleep for 3 days straight if I wanted and I fall asleep in exams and class, Even when I play league of legends (video game) it can happen. It also happened at the Avicii concert. At the moment I am on provigil which kind of works. I feel weird always going to the bathroom every 30 minutes to wash my face at work. I heard that small meals through-out the day instead of a big meal will help. And I get keto diet as it allows your brain to utilize ketones more efficiently, but lets see if it works or not. staying super hydrated is also good.